Thoughts on life, disability, and the power of connection.

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Seizure

Remember the time your kid had a seizure and instead of choosing Denial, which is Optimism’s twin, by making a grilled cheesed sandwhich, you chose to be the Responsible Adult and give him meds but the needle didn’t work and so you texted your husband but instead of texting your husband you actually texted several of your siblings who immediately texted back freaked out that you were talking about needles and drawing air? Remember how...

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Food for Thought

Food for Thought – December 7, 2015 With potential to save lives, CRISPR already sparing mice Whereas the old method, which relied on genetically engineered stem cells, could take as long as a year to produce a mouse strain, a new model can be created in just weeks at a fraction of the cost. Advent: for the ones who know longing As I learned in particular through our lost babies, one after another after another,...

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Thanksgiving Magic

Thanksgiving was amazing. Turkey? Yes. Dessert? Yes and yes. Vegetables? In moderation thank-you very much. But it was the words, oh the words, that were the best part. Let me back up. A few weeks ago Aidan’s teachers asked to add color words to his talker. I still get so greedy for and stingy about adding words to the talker. ALL THE WORDS ALL THE TIME. Let’s open more more more so Aidan can say...

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Food for Thought

Food for Thought – November 30, 2015 Notebooks for Peace “We look through the notebook we see all the work that they did and these are notebooks that will never be filled by kids who were killed,” Slate stated. There was Room at the Inn It has come to my attention that ever since Caesar’s pesky census drew thousands to the city of Bethlehem, rumors have been circulating around the region that my inn is...

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When Gratitude is Practiced

I started taking yoga this year and I look ridiculous. I chose yoga because, no joke, it was the cheapest excercise class I could find. It was weird and uncomfortable at first and I rolled my eyes at all the breathing we did and the nap we take at the end. And speaking of cheap, do I really need to pay someone to tell me to breathe and nap? Apparently, I do. On the inhale, move. It turns out...

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When Gratitude is Hard

Reposting because this is still one of my favorites. Also because we sang these same songs again at my concert last weekend and they felt redeemed…. ******* In response to all of the people who say, “I don’t know how you do it…” First, you could do it too. You’d rise to the occasion, just like I did. Second, you are doing it, whatever it is right now, whether it be crippling anxiety, a season...

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Epilepsy Awareness Month

November is Epilepsy Awareness month. I’m aware every day, thank-you very much. I’m aware that Aidan’s seizures are not nearly as bad as those of our friends, and yet he still gets hurt and his quality of life is most definitely impacted. I’m aware that seizures are not as easily understood as they seem; they aren’t necessarily what you see on TV. Sometimes a strange movement is a seizure and sometimes it’s a strange movement. I’m...

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Food for Thought

Food for Thought – November 16, 2015 University to Employ, House Adutls with Autism New hires with autism could start coming on board by late next year and will be supported by clinical staff and graduate students, officials said. In addition to working on campus, those in the program will participate in life skills training and recreational activities. When she is five she’ll talk, right? But I guess more than that, there is an aspect...

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Notes from an Old Mom

We all know 40 is the new 30 and math is sometimes ridiculous and unhelpful, right? So I’m not really an old mom but I have learned a few tricks in my time with Aidan. When Aidan was little I blogged mostly for therapy and a little bit to help the world open their minds to my son. Now I think I blog to help, to connect and find those other people along the way...

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Food for Thought

Food for Thought – November 2, 2015 Everything Doesn’t Happen for a Reason So I’m going to repeat a few words I’ve uttered countless times; words so powerful and honest they tear at the hubris of every jackass who participates in the debasing of the grieving: Some things in life cannot be fixed. They can only be carried.  I’ve grieved many times in my life. I’ve been overwhelmed with shame and self-hatred so strong it’s...